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New To Here But Await Tests

Stephoney

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Stephoney Newbie
Stephoney
Posted

Hi,

Right as I said I'm new to here. I'm only 24 years old and it's taken all this time for me to get my doctor to agree to test me for celiac disease. Anyways since I was a child I always had these symptoms whenever I consumed a huge amount of anything gluten based I would always rush to the toilet. Celiac disease runs in my family and when I was eighteen I decided enough was enough and convinced my old doctor to give me a blood test. So when I went for a blood test they told me not to eat 8 hours before the test. It came back that I had anaemia and I was put on iron tablet. Since then over the years I have gained the following symptoms;

* Excruciating abdominal pain

* I have ridges on my nails (I hear this is a sign)

* If I eat anything like a pizza - well I'll spare the details but you can imagine what happens

* I also have a lot of back pain

* Suffer panic attacks for no reason

* Have breathing difficulties

* Get mouth ulcers a lot

* Tired all the time

Plus many more symptoms....

Anyway my Doctors decided to treat me for panic attacks for so long and when I went in to see them today they agreed to give me another blood test but I hear this doesn't always give a positive result - they did say if the blood test comes back negative (because I share very similar symptoms with a family member who suffers from celiac disease) I will sent for an endoscopy. I'm terrified of how much damage this may have done to me. My insides feel as if they are burning and as of this morning I have not touched anything gluten based.

My family members celiac was left so long undiagnosed that they got polyps in there bowels that had to be removed because they can turn cancerous! I don't personally want an endoscopy because of the pain but I feel it would give me some relief to know that this isn't the case. Is that an unreasonable request to ask my doctor? My main concern is that I have a baby and I don't want a) him to have it B) I don't want him to be left without a Mummy because they haven't checked it out.

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squirmingitch Veteran
squirmingitch
Posted

Okay, calm down. You're in panic mode right now. Take a breath. Breathe.

#1 --- DO NOT, that is DO NOT stop eating gluten!!!!!!! I can not stress this enough! You MUST be eating the equivalent of 4 slices of bread per day all the way through until ALL testing is finished & that includes an endoscopy! Do not go gluten light. Do not go gluten free for a day or two days or a week & then think if you eat gluten for a week before the tests that you will have enough gluten in you. There are enough false negatives on the tests in the first place. You want the best chance of a correct diagnosis & do not want to mess up that chance by not eating gluten.

And print out these tests & take them to your doctor & INSIST they do all of these. This is the current FULL celiac panel. Anything less is not a correct & full celiac panel.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide

(DGP) IgA and IgG

Also if you are on any kind of steroids or HAVE been on any in the last 2 or 3 months then the tests will turn up negative.

Now, let's talk about an endoscopy. It is not painful. You will be asleep. Plenty of people on this board have had them including little children & all say it's a breeze. Do not be afraid of it. It will be over before you even knew it happened.

And you are very young yet. Your odds of having any chance of lymphoma are so small as to be nil. So don't worry that your future baby is not going to have a mama. And as far as your future baby having celiac disease --- even if it did --- it's really not a bad diet. It's not like being deprived. It's not a horrible thing. And in the future there are going to be so many more diagnosed celiacs that it will be a common enough thing.

So settle down, eat your gluten & the very second the endoscopy is finished you can go gluten free.

We are here for you. We will hold your hand. Ask any questions at any time.

And welcome to the board!smile.gif

MitziG Enthusiast
MitziG
Posted

I second everything that Squirming Itch said. :) welcome!

Stephoney Newbie
Stephoney
Posted
  • Author

Thank you all. I have calmed down but due to how much pain I am in on a daily basis my doctor wants me off it full stop. If it doesn't come up positive on the blood test she is sending me for an endoscopy no matter what.

I have calmed down a lot as I have been of gluten for a fair few days now and I'm starting to feel so much better. From what the doctor said I have done some damage but nothing that won't repair. As for my little boy she said it's too early for him to be detected.

Thank you all for your advice but I can't even bring myself to eat gluten anymore. The gluten will still be in my system by the time I have all these tests so it will still show up.

As for the panic attacks they are slowly disappearing and I'm starting to think clearly again. Thank you for reassuring me though I think it was a bad day as we had been out and everywhere we went to eat they didn't serve anything gluten free and it got me down. But for once I feel like I have energy and the pain is slowly going and my skin is regaining a healthy glow.

frieze Community Regular
frieze
Posted

unless your testing is going to be withing a very few days of your stopping gluten, no, the tests will not nec. be accurate.

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